If this is your first visit, be sure to
check out the Forum Guidelines. You will need to Register
before you can post.To start viewing messages,
select the forum that you want to visit from the selection below.

Hybrid View

new member / single person

Hello,
I was diagnosed with MND in January this year (2019). it was devestating especially as i have suffered with a serious rheumatic condition in my spine for nearly 20 years. At the moment I can still drive and walk (albeit my balance is bad and I had my first fall yesterday and have hurt my right elbow). So I am just about maintaining my independence at the moment. One of the things that the MND clinic are recommending at the moment is getting my integral garage converted to a wet room /downstairs toilet etc. But it is taking ages to get the surveyors and builders arranged to assess my house. Even if it is possible to modify my house to be wheelchair friendly, and builders are arranged and it is completed before I am wheelchair bound, I have another major concern.
My big concern is that I am a single person without a partner. I have some family members close by but, due to severe health problems and other issues in their own homes, they will not be able to provide much practical help to me. So I feel very isolated and very concerned about how I will cope/manage whilst living alone. I know that the MND clinic tries to keep you in your own home for as long as possible and help to maintain your quality of life etc. But much information I have read about other sufferers often includes mentions of their partners. So I am wondering If there are fellow sufferers on the forum who are single and/or contributors that know a sufferer who is single and whether they can provide me with reassurance and/or advice about how to cope with MND as a single and largely very isolated person.
For example I might do whatever I can to get my home modified so that I can stay in it for as long as possible. But, realistically would i be able to and rather than making that potentially big financial decision, should i consider alternative like moving to assisted accomadation etc?

Hi Panniertank and welcome to the forum but sorry that you have been diagnosed with MND. It sounds as though you had a bucketful to contend with, even before MND reared its ugly head.

I can certainly understand your worries about your housing options and being on your own. Let's face it, having building work done is not a relaxing hobby and, as you say, by the time any building work is complete, your condition may have deteriorated. That is one of the difficulties of MND, that everyone is different and there's no way of knowing how and when you will deteriorate.

As I was reading your post, I wondered whether living within an extra-care scheme might be an option worth considering? It would give you your own front door but with carers within the complex. There may also be a cafe/restaurant within the scheme. All the extra-care schemes that I am aware of are social, rather than private, housing schemes, which would mean that moving in would not depend upon you selling your house. That, at least, would remove one of the biggest stresses.

My Grandma lives alone and has recently been diagnosed. She is now at the stage where she cannot do much for herself RE mobility. She has 4 carers come in to her per day- one to get her up/use the commode/dressed/washed/breakfast, the next to prep/give lunch, the next to prep/give dinner and the final to get her undressed/pj'd/into bed.

I would say that it's helpful, from a practical point of view. However, I would say that it's not sustainable. I see you have said there's nobody else to help you out from your family and this is where the big difference comes into play. From my experience, these kinds of carers don't do anything in the way of housework etc.
I do know that you can have live-in carers so it may be worth looking into that possibility, if you're open to it. As you have MND, you should automatically be entitled to Continuing Healthcare, which means you won't have to pay for the care you receive (this also applies to if you do need to move into a residential home, though you should be aware that the choices as to which homes Continuing Healthcare would be limited to a set amount).
Personally, I would opt for a nursing home for a number of reasons: 1) You'll get to know the people looking after you well before any communication issues arise, which means, if you do lose your ability to speak, these people will have already taken the time to get to know you and should be able to instinctively know what you need, when you need it 2) You'll have more freedom in the sense that most residential homes have planned activities- you'll be completely supported and safe when doing these activities, as opposed to attempting to do them on your own 3) You'll meet people that can become close friends, in a similar situation to yourself

Obviously, as you're in the early stages (i.e. still driving etc.), I would hang fire on moving away from your home and I'd also say it's not yet necessary for you to have a live-in carer, but I hope I've given you some options for the future

I am sorry to hear of your circumstances and perceptive of you that you should ask here about the needs of somebody living on their own.

I count myself lucky that I have both a wife and daughter at home, but still facing the same issues in the longer term about the house in which we live and own because, in our case it is not suitable for conversion given it is tall, thin and terraced - so no garage to convert to a wet room!

I am working on a pilot project to be run within South London Branch to try to set up a service that advertises converted houses to the disabled community rather than having people take out the lifts and grab rails when they move out to make the house acceptable to purchase by able-bodied folk - so I wonder if it will be possible for you to move to independent living in an already converted house rather than having the hassle of converting your own?

thank you

Originally Posted by Sheila

Hi panniertank, welcome to this very helpful forum. I am sure you will find lots of advice here .
Best wishes
Sheila.

Thank you all for your feedback. I apolgise if I haven't replied to all of you individually. This is the first forum I have ever joined and i am one of those people who has never used social media etc. So i am not sure about how I am supposed to arrange replies etc.
Clearly there will be major and stressful decisions to make in the future regarding my housing options. It is early days and I am struggling to come to terms with my diagnosis and its consequences in the future. I am often in denial. As well as my rheumatic spinal condition, I had to go through very stressful life changing events in recent years. I took redundancy from my very stressful job and I had been providing care for my parents;- my dad had parkinsons disease. They had social care but i saw how maxed out it was and how my parents struggled when carers werent there. My dad passed away and my mum became partially demented and I had to move her into a residential care home. I then had to clear out her house and sell it. All very emotionally difficult experiences that I wouldn't wish on anyone. But now, I am likely going to experience many of those concerns/difficult decisions and experiences for myself and i feel very burned out. Before I had the symptoms/diagnosis of MND I was often struggling to cope with life after all I had been through.

Hi Panniertank. Sorry for my late response. I agree with Dina that councelling might help you. I'm sorry about the amount of stress that you had to deal with regarding your parents and now your MND diagnosis could feel like the last straw. Take care, Lynne

ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
I'm staying positive and taking each day as it comes.

Reading your reply, it seems to me that you would really benefit from having a counsellor. It would give you an opportunity to talk about all the stress you've had in recent years, and continue to have. One of the neurologists said to me, a few days after my diagnosis, "You can't go through this alone", and that applies to just about everyone with MND, including you.

Please do think seriously about asking for some psychological support. You could ask your GP or at the MND clinic. Stress can be a significant factor in MND.

Hi again. I saw my GP yesterday as I fell on Thursday and hurt my right arm. I did mention my chronic insomnia and anxiety/ panic attacks and she has put me back on a small dose of antidepressant that has a reputation for being sedative and helps with sleep. I did see a counsellor this year, ironically when my symptoms started. But it took a year before my first appointment after requesting with my GP!!!. It is reassuring that there is the specialist MND clinic. My next appointment is a few weeks away so I will be discussing all my concerns. Even though I am still independent I think I need to talk to social services as well. Yes I have always been interested in trains/enjoyed train travel, especially steam trains.

Yes I have always been interested in trains/enjoyed train travel, especially steam trains.

Yes, I thought so. (Guess who is the mother of a lifelong train enthusiast!?!)

It's good that your GP has given you something to help with the anxiety and insomnia. As for a counsellor, do you have a self-referral mental health service in your area? Alternatively, are you able to ring the counsellor you saw earlier this year, or the MND nurses, to try to access some counselling?